Charm,

I would argue that the drugs used for oral cancers may not have long term effects, but other chemotherapy, for other types of cancers most certainly do. I suffered premature ovarian failure after high dose 'ChoP' when I was 28, in other words, I lost the ability to have children, which isn't insignificant.

Just to clarify...

Team,

I appreciate your comments - they give me better food for thought than my own back-and-forth.

OMG! While reading the post by Markus, I just realized that I made sure each center had a linear accelerator (both do), but did not ask if they utilized IMRT, and if that would be the proposed plan for me - I just assumed.

Each of the ROs is in a center (again, just cancer center, not CCC) with diagnostics, chemo and rads all in different departments or offices within the same bldg.

Now I'm wondering if RO2 automatically goes with radiation alone unless mets, or if he was concerned I would become too physically vulnerable during chemo process.

Now I'm having more fun - after bronchitis just before open biopsies and rt. tonsillectomy (got steriods and meds 2 days before surgery), hospital noticed high glucose level - did another test, and doctor's office let me know today I have diabetes. I have always been on the "healthy as a horse" side, and am just amazed.

Oh, and Julieann - I'm with you on the learning s-l-o-w-l-y.

And Davidcpa - you're who I want to be when I grow up - it eases my mind a little each time I read you signature line (dx similar to me "riding my bike . . .")

Be well,

- Pam

Sorry, I hope I did not confuse you. A linac (lots of cool physics in there) just makes the Xrays, the IMRT part controls the intensity and area resulting in a selected volume.
My guess is that they both use IMRT or similar. I ended up getting IMRT in a small place in GA. They did have a brand new IMRT (and knew where what they are doing).
I did not have mets and still had chemo, on the other had you need a big enough number of (active) cancer cells to show up in a PET, so if you SEE mets you know what needs to be done.
To chemo or not to chemo depends on how local the cancer is how paranoid you and your RO/MO are and last but not least how well you can handle chemo.


M

Can I ask, Markus - am I right when looking at your signature to think that your first rad and chemo were on the same date, then a couple of weeks later, you switched to a wider rad field, and switched from Erbitus to cisplatin, then added in carbo (is that carboplatin?) Was this your plan from the start, or did you change the chemo drug and IMRT field based on ongoing diagnostics?

Did you see people in treatment who were unable to complete planned chemo? Do you know why (I'm assuming side effects, but which is my question)? From what I've seen, a couple of places around here have what I'd call some sort of chemo "lounge", with several people in comfortable chairs receiving treatment in one large area. I have no experience to draw from, just what I've seen on a couple of centers' websites and on TV/movies. Did you see/communicate with others in/during treatments?

Pam,
I had surgery first. (minor, 1/4 glossectomy). Then radiation and chemo, the idea was to use something more modern... I.e. Erbitux. well he problem was I had an anaphylactic shock. So that was a no go (long story). We changed the MO and started with cisplatin, which caused ringing so we switched to carboplatin). So you can see we adapted. I still say that my first MO was an idiot. I and my wife (MD) told him that we suspect that I might not tolerate Erbitux because of prior exposure to mice, so we wanted a small dose.. that did not happen.. (funny in retrospect, as many things are).
The reason why the field was widened was because the guy who put in the peg saw a bigger area, so he ratted on me (good man) and talked to the RO and the rest is history. Re chemo, some people have 3x while I had weekly treatments (7). I think this makes more sense and is tolerated better (lower dose).
When I was in the chemo lounge my first though was, goodness, they all look sick (and old)!! WTH. I was the only one in my "lounge" 5 minutes from home treated for OC. I did not much communicate much with others during the chemo, everybody was reading, watching movies (laptops, TV) or working. I had absolutely no idea what to expect beforehand.... so you are way ahead there.
...... The point is, stuff happens and there are very few people where everything happens according to plan. It is probably better to be prepared to change treatments as things develop... not really a bad thing.


M

Markus,

"The reason why the field was widened was because the guy who put in the peg saw a bigger area" - does that mean he looked at your CT or PET, and thought the treatment area was too narrow?

Exposure to mice? Wow. As in, consistent caregiver, or occassional exposure? Stupid question, but was it mice in particular, or any rodents? My son and his girlfriend had a gerbil "village", and I did play with the critters a few times. Did your MO bring up the mice issue, or was it good research on your end (OK, MD for a wife would be very handy, I'd think).

Hey Pam,
The PEG man (gastroenterologist) saw white patches and he communicated that to the RO. There was nothing on the pet, then again you need a sufficient cell mass for it to show up. Realistically, it was just a suspicion without any additional biopsy. For all we know it may just have been leukoplakia. Whatever this was, all of that is gone now. Widening the filed was the conservative thing to do.

Re mice. I used to work with mice in the lab eons ago. (basically the type of mice they use to make MAB's... ie. Erbitux). I would suspect that this is very very rare and you also need a specific mouse strain. We told the MO that I "might" be allergic... call this paranioa on my side (I just hate to be right). So we agreed on a small trial dose, which did not happen. In any case if you get Erbitux or anything else (chemo) the first time you want to be careful.

MD wife... it is very handy but can also be a problem. When you take her to visits the physicians tend to talk with her ... not me. WTH! So we stopped that and I went by myself (.... after some discussions..). Also, when they (MD-wife) are not upbeat, you just know that now you are going to kick the bucket!

M

Pam,

Thanks but I want to be Bill Gates if I ever grow up. At my age I doubt either will happen though.

Hi Rob,
I had an ugly experience with JHU. My brother new a guy in high places who recommended I call a surgeon from JHU. I paid for it on my own nickel and met him. I wasn't even aware that I should have tried to see an ONCOLOGIST, not a surgeon; I was so green I didn't even know what an ONC was.

He just pushed surgery the whole way. It was a turnoff. He even said he'd present to the tumor board (a group of diff docs who make a group decision) and he didn't. However, in looking for an ONC at JHU after that, I found out that they only have ONE H&N one there as the other one had retired. She supposedly came out of retirement but only took appts one day a week to help out.

So although JHU gets high marks for Cancer research and expertise, I am not confident that they're experts in the H&N field.

Joel

Hi Rob,
What was the lotion that you used for your neck? Also, if anyone else has recommendations, they're greatly appreciated.

Joel